Autism research at home

Assistant professor Matthew Goodwin has been awarded $1 million from the Simons Foundation Autism Research Initiative to develop an intuitive system for parents and caregivers to collect quantitative data about children with autism in home settings. Photo by Brooks Canaday.

Par­ents are trea­sure troves of obser­va­tional infor­ma­tion, whether they’re watching how the behavior of their kids changes based on what they eat or how much they sleep. For par­ents of chil­dren with autism, this type of infor­ma­tion can be invalu­able to clin­i­cians and researchers alike. But, according to assis­tant pro­fessor Matthew Goodwin, there is a dif­fer­ence between knowing that your child’s behavior changes when he eats cer­tain foods, for instance, and knowing how often this occurs or how intense the behav­ioral changes can be. Goodwin said that infor­ma­tion would be an impor­tant factor in deter­mining whether those foods really are cor­re­lated to his behavior and, if so, what to do about it.

For that sort of infor­ma­tion, said Goodwin, a parent’s watchful eye is simply not enough. To answer those ques­tions, he needs quan­ti­ta­tive data.

A leader in the emerging field of per­sonal health infor­matics, Goodwin recently received a $1 mil­lion grant from the Simons Foun­da­tion Autism Research Ini­tia­tive to turn par­ents into para-​​professionals, allowing them to col­lect research-​​grade data via easy-​​to-​​use, non-​​disruptive com­puter sys­tems in the home.
Over the course of two years, Goodwin and his col­leagues at the Georgia Insti­tute of Tech­nology will work with fam­i­lies in the Simons Foun­da­tions’ Vari­a­tion in Indi­vid­uals Project, or VIP. The project aims to con­nect genetic muta­tions likely asso­ci­ated with autism and other neu­rode­vel­op­mental dis­or­ders with clin­ical and behav­ioral patient profiles.

With input from the VIP fam­i­lies, the researchers hope to first iden­tify the most impor­tant types of behav­iors to col­lect, then deter­mine the best sensing sys­tems to use. They will then deploy the system—first in the researchers’ own homes with their own fam­i­lies, and then with 10 fam­i­lies with chil­dren with autism in Boston, Atlanta, and Prov­i­dence, R.I. After that, they will repeat the process with 10 fam­i­lies in New York, Florida, and Los Angeles, grad­u­ally increasing the dis­tance between fam­i­lies and researchers, and thus the amount of sup­port the researchers will be able to provide.

The second year will be devoted to data analysis, Goodwin said. Through the use of cam­eras, audio recorders, and phys­i­o­log­ical sen­sors worn and oper­ated by par­ents, the system will track a number of con­di­tions, he said, including sleep, seizures, anx­iety, socia­bility, lan­guage use, motor-​​muscle tone, and body tem­per­a­ture. In addi­tion, the researchers will be looking at gen­eral affect and devi­a­tions from a child’s typ­ical behavior.

Assis­tant pro­fessor Matthew Goodwin has joint appoint­ments in the Bouvé Col­lege of Health Sci­ences and the Col­lege of Com­puter and Infor­ma­tion Sci­ence. Photo by Brooks Canaday.

The researchers have pre­vi­ously demon­strated that they can track these states through the use of dig­ital devices, but, said Goodwin, “This is the first time we’re going to do this with a total lay person.”

While the data col­lected will pro­vide impor­tant infor­ma­tion for researchers attempting to con­nect behav­iors to genetic, phys­i­o­log­ical, and envi­ron­mental fac­tors, it will also pro­vide a valu­able tool for fam­i­lies them­selves. Clin­i­cians can use the data to mon­itor the effi­cacy of var­ious treat­ments and changes in an individual’s con­di­tion over time.

Early diag­nosis and treat­ment have been linked to improved patient out­comes, Goodwin said. But often, because of the com­plexity of the diag­nostic pro­tocol, cases go unno­ticed or under­ap­pre­ci­ated for years. By pro­viding a low-​​impact, easy-​​to-​​use system directly to par­ents and care­givers, he hopes to one day change that.

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About the Writer

Angela Herring is the science writer for the Northeastern news team. In a past life, she made fullerenes (aka bucky balls) at a small chemical company outside of Boston while freelance writing for the Harvard Stem Cell Institute, the Broad Institute and Novartis Biomedical Research Institutes. She earned her Bachelor's degree in chemistry and literature from Bennington College in 2005. In addition to writing stories for the News@Northeastern, she also maintains the university's research blog: iNSolution.

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